• Episode 356: A Final Conversation with National MS Society President and CEO, Cyndi Zagieboylo
    Jun 24 2024
    Over the course of her 39-year career with the National MS Society, including the past 13 years as its President and CEO, Cyndi Zagieboylo has been a driving force behind major initiatives that have fundamentally changed the MS treatment and research landscape. Creating a world where cures for MS are now within reach, Cyndi has led the work to make living with MS better today than it's ever been. On July 1, Cyndi is retiring from her remarkable career at the National MS Society. I had an opportunity to talk with Cyndi about the progress she's witnessed and the progress she has driven in leading the MS Society. It's been a career filled with so many moments that are worthy of celebration, I am devoting this entire episode of RealTalk MS to one last conversation with Cyndi Zagieboylo. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: A final conversation with the National MS Society's President and CEO, Cyndi Zagieboylo :22 A look back at some of the most impactful initiatives that were led by Cyndi 1:43 Share this episode 30:39 Next Week: Lifestyle medicine physician Dr. Linda Doggett shares tips and strategies for making healthy lifestyle choices that will improve your quality of life 31:00 Have you downloaded the free RealTalk MS app? 31:50 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/356 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 356 Guest: Cyndi Zagieboylo Privacy Policy
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    33 mins
  • Episode 355: The NARCOMS Patient Registry with Dr. Robert Fox
    Jun 17 2024
    Research is the engine that drives the future. And participating in MS research is not only vital to improving scientists' understanding of multiple sclerosis, it's also empowering. And the really good news is that you can participate in MS research from the comfort of your own home. My guest this week is the Managing Director of the North American Research Committee on Multiple Sclerosis, Dr. Robert Fox. And we're taking a deep dive into the NARCOMS patient registry. We'll also tell you about the latest version of AlphaFold, a highly advanced artificial intelligence model designed to help scientists design new drugs and target disease more effectively. Evidence shows that the Epstein-Barr Virus (EBV) triggers MS. We're reviewing the results of a study that may help scientists better understand the relationship between EBV and MS. The International Progressive MS Alliance upcoming webcast, Mobility Challenges in Progressive MS, takes place this Thursday, June 20th. Find out where you can register and why you won't want to miss this! And we're just 6 weeks away from Crush MS, a fundraising event in Napa Valley, California that raises money to support MS research. I'll be there, and I hope you can join me! We're sharing all the details. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: The NARCOMS Patient Registry :22 The most advanced AI on earth is focused on discovering new medications 1:40 Researchers learn that Epstein-Barr Virus re-activates and drives inflammation during an MS relapse 4:00 The Progressive MS Alliance hosts a live global webcast this Thursday, June 20th! 7:17 Crush MS is just 6 weeks away 8:39 Dr. Robert Fox takes us on a deep dive into the NARCOMS patient registry 10:08 Share this episode 26:12 Next Week: A special conversation with National MS Society President and CEO, Cyndi Zagieboylo 26:33 Have you downloaded the free RealTalk MS app? 27:17 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/355 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com The NARCOMS Patient Registry https://www.narcoms.org STUDY: Multiple Sclerosis Patient-Derived Spontaneous B Cells Have Distinct EBV and Host Gene Expression Profiles In Active Disease https://nature.com/articles/s41564-024-01699-6 REGISTER for the International Progressive MS Alliance Global Webcast: Mobility Challenges in Progressive MS https://msif.org/webcast-mobility Get Tickets for Crush MS https://www.crushms.org Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 355 Guests: Dr. Robert Fox Privacy Policy
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    28 mins
  • Episode 354: From the Consortium of MS Centers 38th Annual Meeting -- Part 2
    Jun 10 2024
    Two weeks ago, thousands of clinicians, nurses, physician's assistants, rehabilitation experts, and others traveled to Nashville to attend the Consortium of Multiple Sclerosis Centers 38th Annual Meeting. This is Part 2 of our coverage from that meeting. In this episode, we're sharing our conversations with some of the experts who were at the meeting to present their research. You'll hear the National MS Society's Executive Vice President for Advocacy and Healthcare Access, Bari Talente, share her thoughts on why getting early support when you've been diagnosed with MS can make a difference in how you begin your MS journey. Dr. Nancy Sicotte talks about why early diagnosis and treatment are important in ensuring the best long-term patient outcomes. Dr. Brian Sandroff asks and answers the question, "Does exercise improve cognitive function in MS?" And Dr. Anthony Feinstein shares what he and his team have learned about how cannabis impacts people with MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Part 2 of our coverage of the CMSC Annual Meeting :22 National MS Society Executive Vice President for Advocacy and Healthcare Access, Bari Talente, discusses the importance of finding early support when you've been diagnosed with MS 1:18 Dr. Nancy Sicotte explains why early diagnosis and treatment make a difference in MS 8:57 Dr. Brian Sandroff poses (and answers) the question, "Doe exercise improve cognitive functioning in MS?" 17:11 Dr. Anthony Feinstein shares evidence gathered from his team's research into how cannabis impacts MS 23:58 Share this episode 38:13 Next Week: The North American Research Committe on Multiple Sclerosis (NARCOMS) with Managing Director, Dr. Robert Fox 38:34 Have you downloaded the free RealTalk MS app? 38:54 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/354 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com RealTalk MS Episode 353: From the Consortium of MS Centers 38th Annual Meeting with Dr. Kathy Zackowski and Dr. Stephen Krieger https://realtalkms.com/353 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 354 Guests: Bari Talente, Dr. Nancy Sicotte, Dr. Brian Sandroff, Dr. Anthony Feinstein Privacy Policy
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    40 mins
  • Episode 353: From the Consortium of MS Centers Annual Meeting with Dr. Kathy Zackowski and Dr. Stephen Krieger
    Jun 3 2024
    Last week, thousands of clinicians, nurses, physician's assistants, rehabilitation experts, and others traveled to Nashville to attend the Consortium of Multiple Sclerosis Centers 38th Annual Meeting. Welcome to Part 1 of our coverage from that meeting. In this episode, I'm talking with Dr. Kathy Zackowski, Associate Vice-President for Research at the National MS Society, and Dr. Zackowski is sharing some of the presentations that caught her attention. Next, you'll hear my conversation with Dr. Stephen Krieger, a neurologist at the Corinne Goldsmith Dickinson Center for Multiple Sclerosis. Dr. Krieger explains the hidden side of MS, why, when it comes to treating MS, "detecting only what we measure" isn't enough, and why an EDSS of 0 is not normal. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: We're reporting from the CMSC Annual Meeting :22 Dr. Kathy Zackowski shares some of the presentations that caught her attention 1:14 Dr. Stephen Krieger discusses the hidden side of MS, why, when it comes to treating MS, "detecting only what we measure" isn't enough, and why an EDSS of 0 is not normal 18:56 Share this episode 33:36 Next Week: Part 2 of our coverage from the CMSC Annual Meeting 33:56 Have you downloaded the free RealTalk MS app? 34:30 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/353 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 353 Guests: Dr. Kathy Zackowski and Dr. Stephen Krieger Privacy Policy
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    36 mins
  • Episode 352: World MS Day with Rachel Horne
    May 27 2024
    May 30th is World MS Day, and we're taking this opportunity to look at some of the challenges faced by people with MS around the world. Global economics and the peculiarities of different healthcare systems make fundamental issues like access to quality healthcare and affordable MS medications difficult for many and impossible for some. U.K. journalist and MS activist Rachel Horne joins me for a freewheeling conversation focused on the broad range of challenges that people with MS face every day. We're also sharing details about the National MS Society's Black MS Experience Summit, which gets underway June 12th and 13th. Find out why you'll want to be part of this free virtual event. We have a lot to talk about! Are you ready for RealTalk MS??! The National MS Society's Black MS Experience Summit is happening June 12th and 13 :24 This Week: World MS Day is May 30th 2:07 Rachel Horne talks about some of the issues confronting people with MS around the world 8:10 Share this episode 26:51 Have you downloaded the free RealTalk MS app? 27:11 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/352 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Register for the Black MS Experience Summit https://www.nationalmssociety.org/resources/get-support/education-programs-and-library/black-ms-experience World MS Day https://worldmsday.org Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 352 Guests: Rachel Horne Privacy Policy
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    28 mins
  • Episode 351: Managing Stress When You're Living with MS with Dr. Grace Tworek
    May 20 2024
    We've reached a moment in time when it seems impossible to avoid at least some level of stress in our lives. We also know that stress has been shown to make MS symptoms worse and even trigger relapses. We can't eliminate all the stress in our lives, so learning how to manage and minimize stress is an important part of living well with MS. This week, Dr. Grace Tworek, a Clinical Health Psychologist at the Mellen Center for Multiple Sclerosis at the Cleveland Clinic, joins me to talk about best practices when it comes to managing stress when you're living with MS. We're also sharing details about the $649,000 grant made by the National MS Society to support the development of an experimental remyelination treatment. If MS is detected early -- before an individual experiences even a single symptom -- and that individual is treated aggressively with a high-efficacy disease-modifying therapy, could that individual lead a life without experiencing any symptoms of MS? We'll tell you how that scenario is playing out right now. We'll tell you about research that revealed differences in the connections between nerve cells in the brain based upon biological sex. And we'll share survey results that show people with MS may be so embarrassed about some of their symptoms that they aren't discussing them with their care team. We have a lot to talk about! Are you ready for RealTalk MS??! The complexity of the human brain :22 This Week: Managing stress when you're living with MS 2:08 National MS Society invests $649,000 in experimental remyelination treatment 2:57 Stopping MS before symptoms start 4:32 Study shows that connections between nerve cells vary by biological sex 6:30 Are people with MS too embarrassed to discuss some of their symptoms with their care team? 8:31 Dr. Grace Tworek discusses strategies to manage stress when you're affected by MS 11:44 Share this episode 27:27 Have you downloaded the free RealTalk MS app? 27:47 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/351 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com A Browsable Petascale Reconstruction of Human Cortex https://h01-release.storage.googleapis.com/landing.html STUDY: Deep Learning with Diffusion MRI as In Vivo Microscope Reveals Sex-Related Differences in Human White Matter Microstructure https://www.nature.com/articles/s41598-024-60340-y Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 351 Guests: Dr. Grace Tworek Privacy Policy
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    29 mins
  • Episode 350: Choosing Your MS Disease-Modifying Therapy with Dr. Barbara Giesser
    May 13 2024
    There are more than 20 disease-modifying therapies available to treat MS today. Some are considered high-efficacy, some are considered moderately effective, and each has its own risk profile and side effects to consider. So, how do you choose? How much homework should someone living with MS do? Where should you look for reliable information? And what if you and your neurologist don't necessarily agree? Joining me to talk about your role when it comes to choosing the right DMT through shared decision-making with your neurologist is Dr. Barbara Giesser. Dr. Giesser is an internationally recognized clinician and award-winning educator who has specialized in the care of people with multiple sclerosis since 1982, a full decade before there was even a single disease-modifying therapy available to treat MS. Dunk MS takes place This Saturday, May 18th on the UCLA campus, at iconic Pauley Pavilion. And if you're in or around Southern California, you won't want to miss this unique event. We're sharing all the details, so don't miss my conversation with Dunk MS founder, Blake Arnet. Since we're talking about shared decision-making this week, we're sharing details of a study that asked the question, "How much do people living with MS know about MS?" And if you've found yourself worried about smoldering MS, you'll be pleased to learn that a recent study showed that sophisticated PET imaging is able to identify this hidden, persistent inflammation in MS. We have a lot to talk about! Are you ready for RealTalk MS??! 350 Episodes! :22 This Week: Finding the right DMT through shared decision-making 1:04 Dunk MS is just days away! My conversation with Blake Arnet 2:31 How much do people living with MS know about MS? 10:57 PET imaging reveals persistent hidden inflammation in MS 15:37 Dr. Barbara Giesser discusses choosing the right disease-modifying therapy through shared decision-making with your neurologist 20:04 Share this episode 33:13 Have you downloaded the free RealTalk MS app? 33:33 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/350 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Get Your Tickets for Dunk MS https://dunkms.com STUDY: A Systematic Review to Explore Patients' MS Knowledge and MS Risk Knowledge https://link.springer.com/article/10.1007/s10072-024-07541-5 STUDY: Glial Activity Load on PET Reveals Persistent "Smoldering" Inflammation in MS Despite Disease-Modifying Treatment https://journals.lww.com/nuclearmed/fulltext/2024/06000/glial_activity_load_on_pet_reveals_persistent.1.aspx Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 350 Guests: Blake Arnet and Dr. Barbara Giesser Privacy Policy
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    35 mins
  • Episode 349: From the International Advisory Committee on Clinical Trials in Multiple Sclerosis Aging and MS Workshop (Part 2)
    May 6 2024
    As we age, our bodies undergo biological changes. Our immune system changes. Our brain changes with age. Our cognitive abilities change, as do our physical abilities. These changes impact everyone. But these biological processes may impact people with MS differently. And MS may impact these biological processes differently. Just a couple of weeks ago, the International Advisory Committee on Clinical Trials in MS brought together 100 top experts for a 3-day workshop dedicated to exploring how these many and varied changes can impact MS care. In Part 2 of our coverage, we're taking you back inside this workshop, where you'll hear from some of the top MS researchers and clinicians who participated in this important meeting. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: We continue our coverage of the Aging and MS Workshop :22 Dr. Sarah Morrow and Dr. Yinan Zhang discuss survey results which showed what neurologists and other members of the MS care team see as "gaps" in delivering treatment to patients as they age with MS 1:45 Dr. Giuseppe Portillo describes how artificial intelligence can be used to analyze "brain gap" and predict future MS disease progression 13:03 Dr. John Corboy shares results from two studies that focused on discontinuation of disease-modifying therapy for patients over the age of 60 20:31 Kathy Smith talks about the importance of including older people living with MS in clinical research 31:00 Share this episode 42:43 Have you downloaded the free RealTalk MS app? 43:03 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/349 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com RealTalk MS Episode 348: From the International Advisory Committee on Clinical Trials in Multiple Sclerosis Aging and MS Workshop (Part 1) http://www.realtalkms.com/348 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 349 Guests: Dr. Sarah Morrow, Dr. Yinan Zhang, Dr. Giuseppe Portillo, Dr. John Corboy, and Kathy Smith Privacy Policy
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    44 mins